To continue Sophie's amazing work for Kissypuppy - The Sophie Rolf Trust because she wanted to help other poorly children.

Story

Our
Story – The Sophie Rolf Trust - Registered Charity 1156155

Sophie Rolf was a beautiful, happy, larger than
life little girl. She enjoyed doing all things little girls love, especially
her swimming and dance classes. Sophie started school in September 2011,
joining her big brother Jack at St Saviours Primary School in Totland on the
Isle of Wight.

During May 2012 we noticed a tremor in Sophie’s
left arm and, after numerous hospital visits and finally an MRI scan in June,
we received the terrible news that no parent wants to hear - Sophie had a ‘Supratentorial high grade Glioma, bilateral
thalamic tumour’. This is an aggressive brain tumour located in a very
awkward part of the brain. We were told that the tumour was inoperable and the prognosis
poor.

Sophie faced things that no child or adult should
have to go through. Neuro surgery to fit shunts, central line surgery, radiotherapy,
chemotherapy, a trial drug, numerous MRI & CT scans, homeopathic drugs and
other tests were all met with determination, strength, courage and most of all
always a smile. She made us so proud to call her our daughter. As a family we never
gave up hope and actively pursued other medical opinions from Europe and the
rest of the world – however each reply reinforced the original diagnosis.

Sadly Sophie lost her fight in November 2013 at
home alongside her family that adored her so much. She didn’t suffer and as
always, she decided when the time was right.

‘KissyPuppy’ was originally set up to enable friends
and family to fund raise for Sophie and initially was used to
support Sophie’s journey through this including travelling to and from
appointments on the mainland, any equipment needed and creating magical
experiences and
memories. We chose the name ‘KissyPuppy’ as this was a word Sophie used for a very special sort of cuddle and kiss reserved only
for her big brother Jack.

What this devastating process highlighted to us as a
family was the limited healthcare options
available for children with life shortening conditions on the Isle of Wight. There
is no specialist children’s hospice on the Isle of Wight. Families are offered the option of travelling
to Winchester for respite or end of life care, which is a three hour journey
each way, relying on Ferries. Travelling to the mainland at the point when
Sophie was very poorly is something we did not want to be thinking about.

The Earl Mountbatten
Hospice provides comprehensive end-of-life healthcare for theIsle of Wightcommunity.
They support and care for adults living with and dying from a life-shortening
illness and, working in partnership with the local NHS, they are extending
these services to children.

Sophie said early on in her treatment that she
wanted to help other children as they have helped her.........so that is what
we have pledged to do. We have joined
forces with the Earl Mountbatten
Hospice and the local NHS to help support and develop services on the Island
for children and young people, and their families, with life shortening
conditions.Over
a period of time a range of services will be developed offering flexible,
individualised care and support, in the place of choice, built around the
unique needs of each family. Services will be coordinated centrally, and delivered
by a multi-professional team, working together with each family to support
their wishes and care choices.

Sophie’s
first project was to provide an area within the existing hospice building that
will be suitable for use by children and their families. The area was to provide the equipment needed
to fulfil the medical requirements of the individual whilst at the same time
recognise the needs of the family as a whole.

From
day one Sophie was an inspiration to all.
She never once complained or grumbled about what she was going through.
She greeted each and every day with a smile and her attitude and spirit made
her fundraising such a success that within a few months she had raised the £10,000
target set for the first project.

At
the beginning of November 2013 Sophie, just a few weeks before she passed away,
opened the children’s rooms at Earl Mountbatten Hospice, a massive achievement of
which we are so proud of her for.

Sophie
had already started on her next project, a Playground, within the grounds of
the Hospice. In her short life, Sophie
has changed Children’s services here on the Island.

We,
as Sophie’s family, recognise there is so much more to be done. Kissypuppy ‘The
Sophie Rolf Trust’ is now a registered charity. We are committed to helping the Earl Mountbatten
Hospice, local NHS and other interested parties in the continued development of
services for children and their families with life shortening illnesses on the
Isle of Wight.We hope we can continue
Sophie’s good work and make a legacy she would be proud of.